New development in fight against Huntington’s disease draws hope, criticism

U.S.

HOUSTON (NewsNation Now) — Houston’s Astro pitcher Joe Smith and national sports reporter Allie LaForce have made it their mission to help families have babies free of Huntington’s disease.

There is no cure for Huntington’s disease. Once the symptoms set it, it only progresses to death.

Through their program, HelpCureHD, they have helped four families conceive through in vitro fertilization and two babies have been born. The pair said they started the program in honor of Smith’s mother, Lee, who passed away because of the disease. 

In 2020, Smith made a tough decision to step away from America’s pastime to spend more time with his mother.

“She was so fun-loving and just free-spirited, always laughing and just wanting to have a good time,” Smith said.

In 2012, doctors diagnosed Lee with Huntington’s disease, a rare inherited illness that causes nerve cells in the brain to break down.

As the disease progresses, medical doctors say the person experiences uncontrollable movements, emotional distress, loss of thoughts, degenerating motor skills and ultimately death.

Within a year, Smith said his mother’s condition went on a downward spiral.

“By 2013, she was no longer able to drive a car. By 2017, it just got too much to handle and ultimately we ended up having to transfer her to a nursing facility, a memory care facility which was just tough,” Smith said.

Lee Smith died this past August.

Joe Smith said his grandmother had the disease as well. Although it runs in his family, he refuses to get tested for the disease.

“The hardest part is you know your fate,” Smith said.

According to medical experts, a person with Huntington’s disease has it from birth, but symptoms often appear later in life.

About 41,000 Americans are actively showing HD symptoms, according to the Huntington’s Disease Society of America.

Doctors say Huntington’s in adults normally appears around age 40.

Smith is 36.

“If there was a cure, if there was something that I could go in, get treated for, boom, nail it! Like I’m down. Let’s go, but I don’t know with the job that I have to do and being a professional athlete,” he said. “I’m competing against the top 750 people in the world at a sport every single night… I can’t … I mean I don’t know where my mind would go.”

Smith is considered at-risk of inheriting the disease, like 200,000 other Americans in the United States. Medical doctors say many people in his position choose not to know their results. But when the couple decided to have a family, they had to weigh their options. A parent with Huntington’s disease has a 50% chance of passing it down to their child.

So the couple chose to do in vitro fertilization (IVF) and share their journey publicly. They partnered with the Huntington’s Disease Society of America to create a film about the process.

For 10 to 12 days, LaForce takes shots of hormonal stimulants designed to help her body produce more mature eggs. Genetic counselors retrieve her eggs through IVF. Then, they fertilize them with Smith’s sperm.

Doctors take a small biopsy from a fertilized egg to determine which ones do not have Huntington’s disease. It’s a process known as preimplantation genetic diagnosis (PGD).

To keep Smith from knowing if he has the disease, doctors will not tell the pair if any embryos tested positive for it. Doctors will test the embryos for other diseases and will only give status updates on healthy embryos.

Once those are selected, they are implanted into the woman’s uterus. The medical procedure costs up to $20,000 for one round, and sometimes ends unsuccessfully. 

In a chilling phone call, doctors revealed the couples’ first attempt ended with no fertilized eggs.

The couple said they spent nearly $20,000 more to continue another round of IVF. Finally, in 2020, there was success.

“We have three frozen embryos without Huntington’s disease. We are very excited about that. But we were going to transfer one in last April. And of course, that was right after COVID hit and we decided to wait until more research came out about COVID and pregnancies,” explained LaForce.  

Through their journey, they are helping other families do the same through their foundation HelpCureHD, which gives grants to families with Huntington’s disease and connects them with doctors who can help have a child that’s HD-free.

“We didn’t have clarity on how we wanted to help or how we felt we could help eliminate this terrible disease because there is no cure until we tried to get pregnant ourselves. And we realized the financial burden of trying to have a child without Huntington’s disease through in vitro fertilization,” said LaForce.

Despite the couple’s optimism about the process, they admit some people in the HD community disagree with this method. Some people believe IVF and PGD is a form of creating designer babies.

Smith strongly disagrees.

“If you come to us and ask us, ‘Hey, I want a 6’4″ blonde-hair, blue-eyed child,’ like no, that is not what we are doing. We are genetically testing embryos to find out if they have Huntington’s or if not,” said Smith.

Through the program, they have given grants to 23 couples to pay for their IVF procedures. So far, four couples were able to conceive, and two HD-free babies were born.

Rachel and Cameron Salstrom were able to conceive their newborn son Jackson with their help. Rachel has the disease.

“It is completely surreal. We had decided that because of the Huntington’s, that we were not going to have kids. If we were, we were going to adopt because I have the gene and didn’t want to pass it on,” Salstrom said.

Salstrom said her father was diagnosed with Huntington’s disease when he was in his 50’s. At 24, she discovered that she too had the gene.

“Got the test back that I was positive and within 6 months, I got my tubes tied because I didn’t want to chance or have a weak moment and put that on someone else. Because it’s 50/50 if they get it or not,” said Salstrom. 

Through the HelpCureHD program, she was able to get IVF, pre-genetic diagnosis and conceive a baby without Huntington’s disease for free in the middle of the coronavirus pandemic.

She gave birth to a healthy baby boy, while having COVID-19.

But for everyone in the HD community, IVF is not an option. Some view it as an unethical decision, including members of Smith’s own family.

“I know people, I mean my sister she has three beautiful healthy kids. She hasn’t been tested. She didn’t go through IVF. She had them naturally. I mean that’s completely fine,” explained Smith in the Huntington’s Disease Society of America film.

“She told me, ‘I completely really respect what you are doing. I still would not do it because I don’t think I could go through the genetic testing and any modifications to God’s natural process.’ She believes that God will protect her family and that if they have it,” said LaForce. “That there was a reason for it and that God will make good out of it somehow. But I believe that this medical advancement is a gift from God and I respect her decision and thank God she respects ours.” 

While the couple has helped other families to have their HD-free babies, they are still waiting to conceive a little one of their own someday.

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